New w/ques about PDD

iVillage Member
Registered: 07-22-2004
New w/ques about PDD
2
Sat, 01-28-2006 - 11:32am

Hi All,

I have a 9 year old daughter who was recently "diagnosed" with PDD. Both the new neuro. and psychiatrist expressed disbelief that after all the specialists we've been seeing since our DD was a baby, no one ever suggested that diagnosis. Which brings me to my questions and hope that someone can give me some good feedback. But before that, let me give you a brief background history.

When Rachel was born I "knew" immediately that something wasn't right (i.e trouble sucking). At 9 months, she was evaluated and began receiving speech, O/T, and P/T through Early Intervention. Since that time, numerous specialists have seen her and the diagnosis' have ranged from Selective Mutism to Mild Global Developmental Delays. She is a "gray" area kid who never exactly fit into one category but had traits from many different categories. Her IQ is 70 (barely) and she has a Vineland of 66. She is delayed in all areas of development but surprisingly, she is a decent reader and can comprehend some (not all) of what she reads. Everything else however, is very delayed.

Since that diagnosis (and I still question it since I don't know how they can diffentiate between her having Mild Mental Retardation as opposed to true PDD) I have been beating myself up thinking of all the time I lost in getting her Applied Behavioral Analysis(ABA). Now here are my questions

1. Has anyone else had their child diagnosed with PDD at such a late age?
2. If so, should I pursue ABA services or is she to old?
3. Should I consult with a private ABA specialist before I meet with my school district and share her diagnosis (so far, I haven't said a thing to them) to see if ABA is the right way to go or should I just let my district do that?
4. Does anyone know how Mild Mental Retardation is different than PDD? Rachel is related but has poor eye contact and does flap her arms a lot. Past neurologists have said the flapping is "discharge" but NO ONE ever said it's a characteristic of PDD until these two new doctors. This new psychiatrist said it's a "classic" sign. Why didn't the other specialists say that? She even sees a Developmental Pediatrician who NEVER mentioned anything about PDD just global developmental delays.
I guess for me, what's clear is that Rachel is not a typical developing 9 year old. But unfortunately, while a diagnosis was never that important when she was younger, it's extremely important as she gets older in order to qualify for Medicaid Waiver and all the services she could get through them.

Well, thanks for reading my ramble. I am feeling so lost right now. I just want to do the right thing for Rachel and I don't know what that is. I feel like such a failure as her mother.

Regards,

Robin

iVillage Member
Registered: 10-03-2004
Sat, 01-28-2006 - 4:07pm

Dear Rachel,

Well, I am so sorry to hear your story and I have heard others like it. There seems to be SO many specialists who really don't understand autistic spectrum disorders at all, and you almost have to suspect it to be able to find a diagnostician who speciaizes in order to find out more. Yes, many others are dx'ed PDD later and even older than your daughter.

When the sensory system is overloaded --in many different possible ways in each PDD kid-- it is sometimes very hard to tell whether it is also Mental Retardation, although some children are both. Getting your dd intervention for PDD may indeed begin to bring more of her and IQ points and ability to communicate to the surface. It would be helpful to hear what her symptoms are more specifically, such as how is her language and interactive conversations, play with other children, ability to focus on schoolwork (esp. as she is a good reader). How has she been being schooled so far and how is that going? Does she tantrum, have obsessions, sensory issues such as problems with clothes, sleep, food? We may be able to offer more ideas of other ways you could help her if we knew these things.

There are very recent findings that now say that our children can continue to make very significant progress later, such as after 9 years old and even way into adulthood. I would certainly pursue ABA therapy, as much as you can get, possibly both through school district AND privately, if possible. I would certainly take dx to school district, possible have school reevaluate her now, since it sounds like they haven't reevaluated in long time and should.

You also might want to look into RDI (www.rdiconnect.com), a new-ish parent-run home therapy that has really helped our son and other children we know. It is intensive and alot of work for the parents, also expensive to be trained by the center, but the ideology in very interesting, sensible and can really help.

((((HUGS)))) to you. I am certain you are a loving and wonderful mother, and you will now act on the new information and do what you can to help her further development! I understand the guilt, but it is a serious waste of time and only adding pain to a difficult situation already. Please forgive yourself. You are absolutely doing the best you can with what you have.

yours,

Sara
ilovemalcolm

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Sat, 01-28-2006 - 8:22pm

Hi Robin,

I know you from the Nanny/Au Pair board!

Don't be down on your mommy skills. You have always done the best for Rachel given what you knew at the time.

My DS is 4.5 years and PDD-NOS. I can try and answer a few things.

As I understand it, 9 years old is old for an ABA program. My DS does an (extensive) program, and I've been told it usually ends when the child is about 7. However that might be b/c they have started it early and just can't do anymore.

Yeah, the hand flapping is classic autistic spectrum disorder stuff (not always, since my typical 7-year old DD used to do it too. It's only when the child has OTHER stuff going on that it's a cause for concern.)

I don't think it's at all the case that all PDD kids are mentally retarded. In fact, I was at a legislative mtg the other day b/c our state is trying to get funding for job training for autistic adults who AREN'T mentally retarded (currently it's limited to those who have MR). You shoulda' heard some of these moms talk about their kids -- they had good grades and attend college.

If I was you, I would run (not walk) to get a good independent evaluation on Rachel.... perhaps from a developmental pediatrician (ask you ped for a recommendation). See what they recommend....then take that to the school disrict.

HTH,
Cathy